On February 13, disability activists paid a visit to the house of Tomás Aragón, director of the California Department of Public Health. They brought valentine cards, chocolates, and a big request: faster access to vaccines for people living with disabilities.
The turnout was small, but not due to a lack of interest. Many people living with disabilities can’t afford to risk a trip to a protest during the pandemic. Instead of in-person events, they’ve had to rely on technology to voice their concerns about the vaccine rollout. And in California, that means writing letters to health officials and politicians, taking their concerns to Twitter, and calling into public meetings at every opportunity to advocate for their rights.
Despite extensive organizing and lobbying, people living with disabilities continue to face significant challenges in accessing the vaccine. In January, Gov. Gavin Newsom scrapped a tier-based system to focus on vaccinating seniors first, a move that shook the disabled community.
Alice Wong, a disability activist based in San Francisco, published an impassioned message on YouTube in January in response to this decision. She says she’s only left the house once in the past year. “If I am infected with COVID-19, I will die,” she said. “Age is not the only factor in determining risk. The decision by the Newsom administration is an act of violence and erasure for groups disproportionately impacted by the pandemic.”
After weeks of protest, disability advocates succeeded in making some headway. The same day the Valentine activists visited Aragon’s house, Newsom announced a plan to start vaccinating people living with disabilities on March 15. It was a win, of sorts. But as advocates dove into the proposed plan, problems immediately became apparent.
“We do not feel that policy is acceptable.” said Jessica Lehman, executive director of Senior and Disability Action, an advocacy group based in San Francisco. “The list of qualifying conditions is much too narrow.”
The list of conditions that qualify people to be vaccinated in March include cancer, Type 2 diabetes, severe kidney disease, chronic pulmonary disease, heart conditions, or obesity. People with Down syndrome, who are at particularly high risk of death if they contract COVID, are also on the list.
The list mirrors one created by the Center for Disease Control and Prevention of people who are at risk of death if they catch COVID. But the CDC’s list, which was created in March 2020, when research about COVID morbidities was still early, was never meant to be conclusive, or to inform vaccine rollout.
“The below list of underlying medical conditions is not exhaustive and only includes conditions with sufficient evidence to draw conclusions,” the CDC wrote last year. “It is a living document that may be updated at any time, subject to potentially rapid change as the science evolves. Notably, the list may not include every condition that might increase one’s risk for developing severe illness from COVID-19, such as those for which evidence may be limited.”
Those without a condition on the list may still qualify if healthcare providers use their “clinical judgement” to vaccinate people they deem to be “at the very highest risk for morbidity and mortality from COVID-19.” But it’s unclear exactly how that judgement will be exercised. And for people with disabilities that are not visible, there’s no information on how to prove that they qualify for a vaccine.
“The full CDC list should be the starting point,” Lehman said. “Rather than being narrowed, that list should be included in full and expanded to also include all people with intellectual and developmental disabilities, all people who are immunocompromised, and people with other respiratory conditions. The lack of vaccine supply is not a compelling reason to narrow the list, as people over 65 were made eligible long before there was enough vaccine to vaccinate them all.”
The growing frustration from people living with disabilities about the vaccine rollout is finally getting some attention. On Tuesday, San Francisco supervisors approved a resolution urging both the state of California and the San Francisco Department of Public Health to expedite vaccines for people with medical vulnerabilities.
But even if the qualifications are expanded, another problem looms on the horizon. Due to a shortage of vaccines, San Francisco is moving into new tiers before fully vaccinating people in the one prior. Only 60% of people over age 65 have been vaccinated citywide, but on Wednesday, appointments opened up for people in Phase 1B, which include teachers, restaurant workers, grocery store employees, and emergency responders. Statewide, it’s estimated nearly 6 million people fall into those categories. Based on vaccine availability, which is so low that the city’s main vaccination center at Moscone is once again shut down this week, it’s unlikely that everyone in that tier will be vaccinated by the time people with disabilities become eligible on March 15.
And even when they do become eligible, a plan to make vaccines accessible has not been presented. For people with mobility issues, waiting in line outside Moscone Center for hours is not feasible. This entire rollout is, advocates argue, ableist and deeply problematic.
“A policy that leaves out the most marginalized is not equitable,” Lehman said. “ Changes must be made immediately.”
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